It's World Autism Awareness Day. Come and share your experiences.

[PhilPhilConnors]

What better day than to share your experiences of autism, hopefully together we can dispel some ASD myths!

My ds is 10. He was diagnosed last year after a difficult time of trying to prove to others what we see. He masks very well in all the places where we ever need his ASD to be evident!
He will give eye contact, he will chat to people etc.
In school he behaves perfectly. There are signs there, constant finger flicking, avoiding work, getting giddy, but they're not seen because he's not having meltdowns.
At home he can be lovely, but he needs almost constant supervision, he can be very violent, demand avoidant, intolerant of others.

Out and about, he doesn't look different to any other child, but he will run off and swear, and sometimes grab things off shelves and look incredibly naughty.

Frizzcat my dd did similar, still will give a "wrong" answer when anxiety/overload/fatigue is at its highest, then often it's monosyllabic and each repetition gets louder and louder then finally meltdown if anyone repeatedly asks for a more expansive answer.

Most people ask questions wrongly, if you say 'Did you do that because of xyz? Then the answer will be Yes, irrespective if it's right or not, as that makes the questions i.e pressure/anxiety go away. Sometimes, talking is too difficult for dd to do, now a young adult, she can't use the phone, even with close family, can't answer the door.

I've never thought she was shutting me out, I've always assumed it was due to the level of anxiety raised by having to answer questions, especially after a long day at school. She needed a long processing time with absolutely no questions for the transition of coming out of school and settling in at home.

My husband and I both have autism, although he's not formally diagnosed. We're also polar opposites. He's the poster boy for autism. If you put all the stereotypes into one you get him. Most people would never guess I have autism and are doubting when I tell them, except the professionals I deal with. The ones who diagnosed me said afterwards that they knew the outcome within minutes of meeting me, the assessment just confirmed it.

Something I've learnt is that autistic people have an inbuilt automatic autism detector. We can spot a fellow autist instinctively. Not a lot of people know that.

We don't know if ds has autism, and are asking his paed if a formal assessment would be appropriate.

He is nearly 6, has a language disorder (he is largely non verbal and uses Makaton and an electronic talker) he has an above average non verbal IQ, he is under a geneticist and part of the DDD study as it I thought he has a genetic condition :- he has macrocephaly, low muscle tone, hypermobility, a heart defect and problems with his lungs as well as some dysmorphic features (which make him particularly gorgeous!).

Because of his lack of diagnosis but 'constellation of issues' (his paeds words) accessing the right support can be tricky and behaviours (that actually make day to day life very difficult for him) get pushed to one side. He struggles to interact with other children, has huge sensory issues especially around noise, food and baths/swimming/toilets, he is very controlling and is overwhelmed by things not being in his control, he is anxious and fearful of a lot of stuff.

I don't know what the outcome will be for ds, but I think autism awareness could do some wonderful work raising awareness of asc as a co morbid with other difficulties (for example asc in people with genetic conditions like Downs Syndrome often present quite differently). We have also met several young girls with autism, whose parents have struggled with getting support because of presentation in girls being treated differently.

Hello all, Found this thread from another thread.

I have aspergers. Diagnosed at 29! Life has been especially hard recently as our neighbours are having building work done. I suffer terribly with noise / sensory overload. I also had to buy new glasses last week. The whole process was horrible and the day I picked up my glasses I ran to New Look and cried in a changing room for a while. I couldn't cope with the sensation of wearing glasses, felt sick, felt lost and had to have a friend rescue me to take me home.

I get anxious worrying about possible public meltdowns - which makes me more anxious.

I almost started blogging about it all but just assumed that there were loads of other female aspergers blogs out there somewhere

Hi I have a Dd with autism, she is 13 and home educated due to their being no appropriate local provision for her.

She is academically able but struggles hugely with anxiety! She is an amazing person who see the world very differently to most people.

She and I are very similar, I identify with being neurodiverse but dont have a formal diagnosis!

Thanks phil for starting the thread and hope it helps people to understand abit more about autism!

Ooops there

As much as I love promoting autism awareness, what I really want is autism acceptance! Ds is 4 and was diagnosed last year. Both the paediatrician and psychologist made a big deal of pointing out it's asc, autism spectrum condition, not disorder now. Much friendlier than disorder! Ds is awesome - he's funny, sweet, smart, his memory is astonishing, and he is the cuddliest boy ever. He struggles with change and noise, and is hugely picky about food. Honestly, I love the fact he's autistic. It does make some stuff harder, but they way he sees the world is magical and it's a privilege to be able to share it with him. We don't meet complete fuckwits too often, thankfully, but I do hope that things like autism awareness days mean there will be fewer people keeping their child away from my ds "so he doesn't get in trouble", or saying "oh, I'm so sorry," with a sympathetic head bob when we explain to people he's autistic. We aren't sorry he's autistic - we are sorry people are ignorant about autism. Ds attends a mainstream nursery and the kids there are brilliant with him - thoughtful, gentle and very inclusive. It gives me hope that with more education, that's what the world could be like for everyone with autism.

Flyingboy is now in full time work, drives a car and contributes to society. He's lovely and frustrating at the same time. I wish his path was easier but he is an amazing person. We lurch from one anxiety to the next and I wish people wouldn't judge his ability on the fact that his writing is that of a four year old and that he is a bit quirky. I wish he had friends and could have a girlfriend but I don't think that's going to happen with his funny noises and stimming.

blankmind I don't think he's shutting me out, I worry that he thinks we are doing that to him, because I've not found a way to communicate that's acceptable to him. I just find it hard, I worry he thinks we're not interested or leaving him out.

ArabellaTumble do your blog. I'm involved in a local autism charity and I know so many parents and girls with autism that would love something like that. The stereotype, one of many is that it is a male condition and the girls naturally struggle to indentify with that.

I don't know if this is the right place to say this, but I really feel like Autism awareness needs to get some teeth. I look at others sections of society that often feel and are marginalised I'm specifically thinking about mental health and LGTB charities and awareness groups. They've had endorsement from some high profile people and they've run with it, push push push for greater awareness, acceptance and understanding. Now granted they have a long way to go but they're raising awareness, they've got hold of that lead and they're not letting go.

I've never felt that with any autism awareness groups or charities, what I mean by that is they rarely make some noise outside of the autism world. There is no coordinated approach amongst the charities to raise not just awareness but actually discuss what is acceptable and what is not, I don't know I'm rambling I just can't believe that increasing numbers of children and adults are being diagnosed and yet society has not got any pointers on the morality of how they should treat people with autism, because some people need it. Many professionals lack knowledge, empathy and ignore carers and people with autism, although I concede there are some fantastic professionals out there but not enough. The fact that there was a BBC news report this week discussing the "autism crisis" in direct relation to life expectancy and it just makes me so angry and I think who is really fighting for us? Who is pushing our agenda? Does anyone else feel this way or am just angry?

Does anyone else's adult child talk to themselves? DS often talks to himself at length, going over things that have happened to him. He also still lifts door handles before opening the door, going back to do it again when he is really stressed.

Joffrey, I was heartened to read about your DS. My youngest DS is 7 and also has atypical autism (diagnosed at 3), severe dyspraxia and low muscle tone. He also has ARFID and severe sensory issues. He reads quite well, but really struggles with maths and writing (in fact, he can't really write). It was inspiring to see that your DS learnt to read at 17 and now loves books. It gives me hope that my DS may one day be able to grasp more mathematical concepts. However, despite his difficulties, he has a really fun sense of humour and loves sarcasm and playing tricks on people. He is also very cuddly and affectionate.

I have 3 DS and tbh, I think they are all on the spectrum. DS1 and DS2 are very literal and aspie. DS1 was assessed a year ago, and was 'borderline'. He copes well at school and has lots of friends, but at home he jumps about, has many obsessions (warships and dinosaurs being prominent at the moment) and still enjoys playing with brio trains and making railway layouts (he's 13) DS 2 is currently undergoing assessment and is the one I worry about most as he has no friends. He just can't do social chit chat and doesn't understand why his peers do not want in-depth discussions of 1960s DR Who episodes.

I wouldn't change them though. They're such fascinating people!

"Something I've learnt is that autistic people have an inbuilt automatic autism detector. We can spot a fellow autist instinctively. Not a lot of people know that."

Good to know I'm not just armchair diagnosing willy nilly, I'm using my inbuilt detector :o

DS1 was diagnosed with Asperger's 3 years ago tomorrow. Life is a living hell. He's violent, nasty, manipulative, selfish and unkind.
I'm not proud of autism. I'm not glad he's autistic. It's shit for him and everyone around him. I literally cannot think of a single positive to it.

And yes we've done all the courses, we've tried all the techniques, we've asked for all the help. Fuck all difference. It'd be nice if other people would occasionally admit that actually it's fucking shit most of the time instead of pretending it's a bed of roses.

Not a bed of roses for us Rose either, sometimes there's good things, a lot of the time it's shit for all of us, we're not saints, it's unfair, no one chose it. We're tired physically and mentally and I spend most of time suspended between, fear, tears and desperation. I feel like we've always been walking up a steep hill.

I think many people feel that way, however, writing it down even anonymously is hard because to me it feels like a betrayal of Ds.

How old is he Rose?

I wanted to post something positive, especially for those whose kids may have fairly recent diagnoses because I vividly remember the day we were told his diagnosis - we walked round afterwards, just numb. And I remember him going to his special school nursery for the first time and wondering what the future would have in store for him...

Right through school he couldn't read - high school where he was chucked into mainstream with little support and really couldn't cope with the noise levels, etc... Would never have dared to dream he would go to uni one day. He has done so well and come so far from being that little screaming, non verbal boy. (Done it all himself and with the help of a brilliant, supportive Art Dept at his old college). Sometimes his autism works for him - he is very hard-working because he is so focused on work.

Larry my other son who has severe dyspraxia, talks to himself! He also has what we call 'the vestibulars' where he literally paces the room bouncing off the walls... (And he's 26!) My autistic/dyspraxic son, not so much. If he gets really distressed when he's home, he walks and walks for miles - we live in the middle of nowhere.

Rose, he sounds like my ds was (and is sometimes). He has PDA. The strategies are different to normal ASD strategies, and aren't usually recommended by professionals and parenting classes.

Life was hell until we went from strict routines and boundaries to reducing demands and allowing him more control over his life, which reduced his anxiety (which comes out as violence, swearing, lashing out etc)

The Explosive Child is an excellent book for children like this.

We've gone from things being shit all the time to now seeing that we have some good days where he's more relaxed and things are a bit more predictable. We do have bad times though where we have weeks of constant awful behaviour. It's certainly not a bed of roses!

We have a theory with ds that if his school actually gave a shit and supported him, he wouldn't need to explode as soon as he gets home, and that's where awareness comes in.

I wish more people would understand that autism isn't always obvious, and with some children, if you don't know exactly what you're looking for, and you won't listen to the parents desperately trying to tell you, then you have no chance of helping that child.

PhilPhil - I agree that it is very confusing that World Autism Week and World Autism Day both start on 2 April.

Frizzcat - the NAS are doing excellent work in helping 'the outside world' become more aware about autism, eg. their recent campaign to highlight the impact of late diagnosis and their current Autism Awareness Week, including the TMI film, which was shared at 11am on the launch date across social media earlier this week.

On a more personal note, I have a 16-year-old son who was diagnosed with HFA a year and a half ago, after a long, rough road to getting an accurate diagnosis. I managed to get him into a specialist school with that diagnosis and he is now taking his GCSEs. He doesn't have any friends, but we do sometimes manage to get him to come out with us on family trips (if he's having a good day). He also doesn't really accept his diagnosis, which is a shame because I think it would help him. Unfortunately, by the time he received the diagnosis, he was fed up with professionals giving him labels. Maybe when he gets older, he'll accept it.

PhilPhil - I wish more people would understand that autism isn't always obvious... - yes, even some professionals struggle with that: we had a clinical psychologist say, "I can tell by just looking that your DS doesn't have Aspergers". DS had just walked in the room and sat down!

One aspect of autism awareness I'd like to see more of is seeing people with ASD as people with positive traits, rather than just a negative condition. It's not that much fun being characterized only as a drain on resources and society. Though of course the people who do see me as a waste of space would also see me as selfish and petulant if I went and jumped off a cliff - rather than thinking i had the insight to know what they wanted - and rather than someone who has had enough after nearly 40 years of being constantly told I'm a waste of space.

More on this thread:
www.mumsnet.com/Talk/relationships/2605833-How-to-deal-with-people-who-only-respond-to-you-as-impaired-not-as-a-complex-human

For me, growing up with an autistic brother was fucking shit. I really can't put it any other way than that. He is very violent, manipulative and controlling. We've had behaviorists, therapists and others in to work with him and us, and endless reward schemes, sensory diet activities, social skills programmes etc etc. It hasn't worked. To be honest, I doubt he wants to use other outlets for his anger, hurting his family is totally fine by him. God knows where he'll end up when he's older, I couldn't have him live with my kids. I would never forgive myself if he did to them what he used to do to me.

However, as a teacher, I've also worked with plenty of amazing kids with autism and I've enjoyed that a lot. It's been great seeing them progress. But unfortunately my family experience with autism has not been a happy one.

Just stepping back a second - IoraRua - do you think some of your brother's anger might be directed at his family because they're the closest people to him who have always seen him as wrecking their own lives?

Certainly one reason why I don't say much around my apparently perfect family, and why I onl visit them once a year and stay away from them as much as possible, is because they think i'm too "subnormal" to be human. It's interesting that friends in other cities who have never met my family see me as quiet, serious, probably a bit aspie, but not a drain on society or on other people. People who mix principally with my family but not me know of me as the disabled weirdo who wrecked my family's life.

No, magnificat, I don't think that at all and I don't think much of your insinuation. My brother has been given a lot of support and love from the family. The behaviorist actually suggested to us that the reason he kicks off with us is that he knows he can, this is his safe space.

I love him, but god almighty he's hard to like. I went through a huge amount of therapy to be able to admit this - that I had a shit childhood, and that his behaviour has hurt me - and I am not about to take that back.

So, wrecking our lives? No. Does his behaviour make our lives difficult? Yes. Has he threatened my life? Yes, and on occasion he's tried to carry through with that. I still carry on trying to help him. But now after my therapy I'm not afraid to admit that I need to take care of myself first.

The OP asked for experiences with autism. This is mine.